Did moving from CAMHS to private psychiatry help your teenager?

[Ginflinger]

DD16 has been under care of CAMHS for over a year. Extreme self-harm, multiple suicide attempts, out of school, diagnosed autism and ADHD last December.

She has made little to no progress over the last year. CAMHs mental health practitioners have been helpful to us. But psychiatry has been really unhelpful, and recently via a locum actively damaging.

We are considering moving to private psychiatry.

Did you move away from CAMHS to private care? If so, how did it work out for you?

We are desperate. So grateful for any advice or experiences. Thank you.

mine is a lot younger but camhs have ranged from: a nothingburger of continual assessments and change of personnel, but offering my child no actual help; to interactions that added to stress and were scary for me (as the implication is always it's something I'm doing wrong, first)... to downright traumatising for my child due to applying the wrong therapies and inexperienced therapists. The two simple things I asked them to do, they didn't do. They have done nothing for her in a timely fashion, and the nothing they have done has been done in a way that has wasted my time and caused me stress, for 3 years.

All our private therapy, otoh, has been insanely expensive but actually helpful, supported her with professional skills and tangible therapeutic input, that she could access because it was well delivered. They have always supported me with kindness and actual knowledge that was useful and that I didn't already have from googling. The same is true of all private vs state provision we have ever had, from OT to SALT to psychotherapy to play therapy. Oh and private nutritionist vs the GP as well.

I am sure others have had better experiences of camhs. But if you have several thousand pounds at all,(and many of us don't, which is why it is all so howlingly unjust) - then the right targeted skilful private intervention is likely to beat camhs hands down.

Same experience here. First referral to CAMHS at eight, finally got an appointment at 16 after her first suicide attempt. GP friend recommended getting a private assessment at the Priory so psychiatrist could recommend appropriate therapy. He ended up seeing her monthly himself. My very kind sibling paid as I wasn’t in a position to.

Thank you both. I'm sorry you've been through this.

If you can afford private, then I say go for it. He’s not far off moving to adult MH services and they are beyond shocking too.

Yes, because CAMHS did nothing except parent blame and deny ADHD was a possibility because DD was 17!!! And the assesment gigs that led to nothing.

Private psychiatrist and buckets of therapy and some hospital provided therapy as day patient. In total about £24k, BUPA funded about half. If I had to do.it again and didn't have money or insurance I'd remortgage if possible. It was like comparing night and day.

Thank you. And useful - if overwhelming - to hear the costs (obviously different for different experiences).

@Ginflinger dd was cutting and taking overdoses and restricting food. She was depressed and anxious and probably always will be prone to anxiery and depression. The root of it was the ADHD and diagnosis and medication were a real turning point. She also has autistic traits but didn't reach the threshold for diagnosis.

She is 28 now, manages her MH and ND well. Went to uni after a gap year (year out), is a secondary teacher with an SEN specialism. She's getting married next summer.

This too shall pass

If your illness doesn’t fit what your local nhs currently offers, and often it won’t, then you need healthcare that does - ie pay for it.

But my local NHS did offer specialist support for my autistic and depressed child. It eas camhs and its Autism And Learning Disabilities Lead. It's just that the actual support itself was lacking in both quality and timeliness. She fitted exactly what the local NHS offered and were supposed to help her with, they were just crap at actual helping.

We have bypassed CAMHS altogether as our DS is 17 and the waiting list was far too long - he needed help quickly.

We contacted Stepping Stones and were able to access a Psychiatrists appointment within 3 weeks. After the first appointment (online) we had a diagnosis and prescription for Sertraline - with a further appointment in 4 weeks. That initial appointment was £500.

He does see a Psychologist fortnightly too (again we pay privately for that).

We have foregone our holidays this year to pay for treatment. We're lucky we have the capacity to do that.

I'm so sorry - and I hope you are able to access the support your daughter needs if you do decide to go private.

Yes my dd was not offered anything from Camhs.

we went private and she now has an autism and adhd diagnosis and is on adhd meds and a combination of duloxetine and amytriptyline.

significant improvement especially on the self harm.

@Ginflinger one tip that's worth knowing is that therapists are a bit like finding comfy shoes. You have to try a few to get the right fit. If your DC isn't engaging it might not be because they are being awkward. Sadly, it's part of the overall sunk costs. DD settled on a therapist through Relate who I tried in desperation. Their charges were means tested and it was just a stroke of luck.

Yes we did and it was life changing for my daughter. If you can afford it do it. The best money we ever spent.

I wasn't persuaded that the issue with CAMHS wasn't as much about lack of organisation combined with low efficiency/competency as about limoted resources. However I live in an area where the provision has been exceptionally poor and with children's services in special measures. CAMHS spaffed £3m up the wall on redesigning the service which was then even less fit for purpose. Significant sums have also been spent on reviews in 2009, 2014 and 2018, all to no avail.

Thank you all so much.

Final question. Partly I think the issue is that her treatment doesn't seem to reflect her neurodiversity or take it into account. No efforts to understand what her autism means for her, understand her sensory issues etc.

Did you see a difference in the approach to this in CAMHS v private?

100%

An example from my experience. I was offered art therapy with camhs, and subsequently heard (from a private therapist) that the body which trains camhs practitioners to work with autistic people is now cautioning against art therapy for autistic girls who have issues with organisation, with processing instructions, with needing to understand the purpose of tasks. It is too open ended, the social demand is too great, and for children with poor interoception and emotional literacy, the requirement to express their feelings in an open ended way is baffling and stressful. But this is high end training that hasn't filtered down to the usual camhs teams yet.

I then asked camhs how they were making accommodations for this, and what they saw the goal of therapy to be for her, and they just turned it round to me and asked me what the goal was for me. I said well, it sounded good when you started describing it, but then my daughter found it very traumatic to access and refused to go, so I looked into it more and found out all these contra-indications - did you know about these and what do you think? Tumbleweed. No significant response to my emails or calls, just a faint oh well if she can't access it and you can't persuade her to come, we need to try something else.

I am now not sure our camhs team fully grasp autism in girls and how precisely it impacts mental health so I am very sceptical about what they might offer next.

Yes. For example my DD did 6 CBT sessions which actually were useless. She was far too distressed at that point to get anything out of it. We then had some sessions at a sort of occupational therapy place which was full of toddlers with autism so she found that humiliating. It was at that point I learned to trust her opinions and our opinions that this was not the treatment she needed.

That's exactly what I am seeing @partypartychicken - lots of blather and no-one actually taking charge or coming up with proper plans or alternatives. We must be costing them thousands. It feels wasted.

And @divingworldchampion I think that's exactly it, it's being able to trust our instincts which I have been too frightened to do.

CAMHS is hopeless where we are. DD15 was out of school, seriously self harming and had 2 suicide attempts this year, second one ended up with a week in hospital. She was STILL rejected by CAMHS 3 times. No idea what you have to do to get help through CAMHS. We paid for a private psychiatrist who prescribed anti-depressants and melatonin and this has gradually improved things over the last few months to the point she could do some of her GCSE exams, which is amazing. We suspect the underlying cause is undiagnosed ADHD and will be paying for a private assessment over the summer. Can’t really afford it, but her mental health has to come above everything else

I would add that CAMHS continued with DDs autism assessment (literally came through 1 week before her 18th birthday and we first saw them when she was 14) whilst the psychiatrist focused on talking therapy for her depression and suicidal ideation alongside sertraline and melatonin. CAMHS were happy with this split of care.
Also I want you to know she is now at university (living at home but enjoying it a lot) and is even spending this summer teaching abroad. I never thought this would happen, I want you to have faith things will can better.